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Monday, 6 February 2012

PIP criteria - The Reality

The brilliant Sam Barnett-Cormack has been putting together a simplified version of the criteria for PIP (Personal Independence Payments, the replacement for DLA or Disability Living Allowance)

As soon as it's 100% signed off, I will of course be sharing it far and wide. It is designed to help us all respond to the Government consultation on PIP criteria, not as a guide to applying for the new benefit.

Campaigners have argued strongly that we should not be expected to pass law for a new disability benefit until we knew exactly who would qualify and under what circumstances. Despite this, the Government only released the PIP criteria the day before the vote in the Lords on PIP. The criteria are desperately complicated and there was no practical way that anyone - charities, DPOs, media or campaigners could have considered them before the crucial vote.

I just read through our simplified version.

Please remember that we are constantly assured that "No-one who is genuinely disabled has anything to fear from PIP" (Grayling, Miller, IDS)

I won't go into everything, there's no way I could here. I will however, go into how they will affect people like me with bowel disease. This will involve much discussion of pooh. You've been warned.

Under ESA, I simply would not qualify. This is because the "descriptors" ignore pain, fatigue, vomiting and diarrhoea. The only possible way someone with bowel disease could qualify is if they are incontinent. But not just a bit incontinent often. No, I must experience a "full and uncontrolled evacuation of the bowel" at least once a month.

Translation? Poohing yourself at work a bit most days is not a reason not to work. Poohing all over your boss is.

Under the new PIP criteria it appears to be even worse.

If you use a stoma or catheter and manage it yourself, you are not considered incontinent and will get just 2 points. You need 8 to qualify for PIP

If you are incontinent but can clear up after yourself, it doesn't count.

They don't even consider changing the bed sheets or your clothes as "needing help"

The only thing that is classed as "help" is if you literally need someone to clean your physical person.

If you have a stoma it does not matter if you can clean your own bum or not.

The only other possibly way someone with bowel disease might qualify is under "feeding".

If you are fed by tube, as long as you can set up the feeds yourself you will get just 2 points - you need 8 to qualify for the "Daily Living" (previously "Care") component.

**Technical point but I need urgent clarification on TPN under this descriptor (Total Parenteral Nutrition) This was always an automatic qualifier as it involves being fed into a central artery and must be done under strict sterile conditions. The risk of life threatening infection is great. You can however, in theory, be trained to do it yourself at home, in which case, under the criteria it would seem not to qualify.

I would simply ask that every MP reads this article. Do we have anything to fear? I'd say we do. And this is just bowel disease. Is it humane? You decide. Is it based in any way on the actual experiences of incontinence and the costs (financial and social) of dealing with it? Clearly not. Does it mean that my life is not riddled daily with the pain, difficulties and embarrassment of bowel disease? Of course not. If I can feed myself by tube does this mean my life is no longer threatened by infection, malnutrition, possible obstruction or perforation of the bowel? No, if I am feeding myself by tube, it means I am more likely to be at risk of all of those things.

Finally, when it comes to the mobility section, you know when you were writing essays for school and you started quite well, then lost the will to live and ended up concluding it in about three sentences so you could watch Dallas? Well that's how the mobility section of the PIP criteria comes across. It doesn't even make sense and our finest Spartacus minds have not really been able to fathom exactly what the Government intend.

I imagine this means the Government don't actually have a clue themselves.

Hi Mark! I am keen to comment on your question, because it closely relates to my own biggest concern regarding PIP for myself.

I am narcoleptic, and one aspect of this (for me) is something I've read described as "sleep inertia" or "confusional arousals". So, slightly different from you, I have no physical problem getting out of bed (at least not from narcolepsy). However, waking me up enough to do so is a big task. It takes me about an hour to wake up to the point where I respond rationally and don't go back to sleep, and I need someone with me in that time stopping me sleeping and prodding me, trying to engage with me. This is my most significant care need, to me, but it is completely neglected in PIP, as per the current draft.

I see this as related to your issue because it could easily be covered by the same activity - say "waking up and getting up".

However, playing Devil's Advocate, or trying to get inside the Government's thinking, I suspect what they think is that anyone who can't get out of bed on their own will engage higher-scoring descriptors on several other activities. I am entirely unconvinced of that, even if it were a good reason to ignore one particular need.

You cant help but feel that they have their agenda and be damned anyone who doesn't agree with it oh and in the process they'll decrease the surplus population at the same time. Win, win as far as their concerned.

That's appalling, I saw your tweets earlier and do not understand their logic for any of this.

I don't find the 2nd draft criteria I skimread this morning (are you working from a later version?) made sense for me as a sensory impaired person with communication needs. I'm not entirely convinced I'd get enough points under care either - cooking not happening, housework not happening and so on. No handling of "repetition" being a problem which is my biggest issue. I can do most things once - whether I should or damage myself in the process is the main issue.

My mobility issues are around crowds and vestibular issues, I can walk fine, but if there's people milling around I'll keel over. There doesn't seem to be anything under PIP for that yet I get lower rate under DLA.

This pretty much looks like only severely severely disabled people who fit specific boxes will eligible with lots of people with varyingly moderate needs getting ditched entirely. Surely most DLA recipients are comparatively mildly impaired and the DLA is the boost up that enables us...

Transcript of House of lords debate Wed 16th March 2011, Lord Freud in answer to Countess of Mar on ESA eligibility criteria in fluctuating conditions. An activity must be able to be performed "reliably, repeatedly and safely, otherwise the individual is considered unable to complete the activity"

http://www.meassociation.org.uk/?p=5180

Sue, is this definitely recorded as applying to PIP criteria as well as to ESA?

Don't forget, Sue, that repeatedly just means the normal number of times to do that thing over the course of a day. This means that repetition is simply not a relevant point for some things.

It needs to take account of the impact of doing each activity on other activities the same day, or even subsequent days. I could possibly cook a meal from fresh ingredients every day (leaving aside the lack of safety, need for 'prompting', and so forth), but I wouldn't be able to do most of the other activities the same day (or ever, if I were doing it every day).

I can wipe my bum....but often use commode that I cant empty for when I cant make it to the bathroom. Not sure under PIP if that counts for anything.

Same with getting dressed could manage to get dressed say in half an hour with all my big baggy pjs but I need someone to bring them to me for when I cant get out of bed, need someone else to sort and do the washing for me etc.

I can often put a meal into the microwave and order food on line , I cant get up to open door to delivery man, put it all away, or sort out the dishes and the rubbish and recyling. They cant just consider part B in a task and ignore part A and C!!!!!

Under DLA there was bit where you could put what else you wanted help with ie to go out, visit, hobbies etc Personal Indepenment Payments is so narrowly focused on the bare essentials, eat , drink, wash body its not a life. It matters because care is so rationed by councils that if we dont qualify for PIP Im afraid we will be struck off their list as not needy enough.

I was thinking about this at the weekend. My OH can manage his finances - but needs my help to sort out paperwork for filing, shredding waste that could be used for ID fraud and disposing of the rubbish/recycling.

So does that mean because he can make financial decisions he gets 0 points even though he needs help to manage his papers.

Then there is the absence under "communication" in the PIP criteria for needing help with writing/completing forms etc beyond "Needs assistance to access written information" (which just suggests people who can't read - because we all know communication only goes one way). Just last week had to fill out the form for a blue badge because there's no way to fill it in online - has to be written.

The government clearly does not understand disability in any shape or form. I'm sure when history lessons given about this government they will be seen as leaders that could and should have made things better for it s people it just condemned them to the scrap yard and left us to rust. Uncaring to the point of people put at risk and neglect. Surely we need to make our systems better and prevention is the key. I call dla a cheap to keep benifit because most who access it I imagine do not need expensive social care therefore the cost is minimal and savings to government more than they could ever calculate because they clearly do not understand disability, plain to see just by reading this blog. Thanks sue

All very worrying. I am partially sighted and currently get LRC and LRM, under new PIP I will lose my care, as I score 4 points for needing help with cooking and only 2 points because I need visual aids to help with reading (lighted magnifiers and screen readers). A score of 6 no longer qualifies. As most people previously qualified for care under the cooking tasks, I am not surprised they have targeted this, as this will remove many people from LRC. I have made the RNIB aware of this, as many VI people are going to lose out here and I hope they will also help with arguing the case. What a horrible country we have become with the most vulnerable being treated like this, it disgusts me. I also face losing ESA as my husband works, we will be approx £560 per month down if I lose DLA as well. We will not cope as when I had to give up my admin job due to my sight loss, the benefit I received was less than half my wage, but we just about survived, now we won't.

Mark, to score the lower points for being able to use a microwave, you have to be able to use it to cook a meal from fresh ingredients, specifically including peeling and chopping veg and opening a tin. Being able to cook ready meals doesn't count.

When I looked at the criteria re microwave meals the 'preparing' bit has been left out of that descriptor - hope im wrong, but it read to me like the prepare bit is left out of the microwave meal bit? barbsisi x

I've been wondering this for ages about the microwave part how can you follow a healthy, balanced diet, using only a microwave for cooking, given that different things need different amounts of time to cook...or am I just not being resourceful enough?...

Preparing isn't mentioned in that descriptor because that descriptor only applies if you can prepare the meal. It says 'cook a simple meal', and a simple meal is defined as being from fresh ingredients. As written, there is no ready-meal test involved.

well i am totally and utterly disgusted at this bill as i will also struggle to pass such ridiculous rules. unless your dead dont apply, and if you have died pay us back and tell us attitude. i cant control my bladder and often need help but they cut my carer as considered low care, yet it distresses me, let alone struggle to wash in wet room with one arm, now i dont get the help. i cant see in one eye so also this affects me, and ever tried changing a duvet with one hand, it virtually impossible, so would have to ask a passing neighbour now. im sick of this lot pushing me around from pillar to post let alone fact they have put me in wrag group after fighting to get my esa reinstated, so another appeal is on way to get in support group and my dla so far hasnt been touched til next yr when another battle starts for that.i rarely use the word 'hate' but i do this lot they are the most despicable excuses of humankind i have ever come across.i wont stick all my ailments in here as there are many but these few are relevant to this blog. so maybe those with bowel issues and ppl like me should s**** and p**** on this shower we call a goverment

Its a worry for those who claim carers allowence and have to care for 35h a week.Under such strict PIP they could well argue no way does it take you 35h week to wash and feed someone. If they are ignoring other daily care needs apart from eating, drinking, going to loo.

Fortunately they aren't, as yet, saying that the care you provide for 35 hours has to be in the activities covered by PIP, just as at present those 35 or more hours can be activities not considered for DLA (such as laundry, tidying).

Thanks, strange that if you have a full time carer they can be considered "paid" to do those tasks, yet if I have to pay someone to do them for me because I get DLA and no carer I cant count them towards DLA/PIP to claim it!

Many carers will probably lose Carers allowance as the person you care for will need to get PIP to get it. If you're working age you'll have to get a job- at least 24 hours a week now not 16 to get out of unemployed benefits based on changes to working families tax credits announced recently.

I've emailed this to my MP asking he actually reads it (his emails are read first by a secretary, they are very good though I receive a reply within hors and he's writing me a letter about my concerns over WRB). I hope he reads some of the comments too, it's very upsetting the distress this is causing vulnerable people. It's a matter of preserving peoples dignity and quality of life too which they are ignoring, it's disgraceful.

I suuffer with epilepsy,depression and was diagnosed with a personality disorder non defined.I have a long history of suicide attemps from a very early age due to sexual abuse in childhood the experts say.My coping skills are shot and the more stress and anxiety i suffer the more seizures i have.I'm a walking zombie due to exhaustion and lack of sleep due to the stress and worry of these changes.

I have a history of suicidal behavior too so sympathize with you a lot, I don't have fits but do suffer anxiety and panic attacks. They aren't thinking what all these changes are doing to people like us it's very alarming. I'm just thankful I don't have to deal with this while in acute physical pain or being unable to get out of bed for physical reasons. Makes me more determined to fight not only for myself but for everyone who is so disabled it's a challenge to get out of bed let alone the house.

I'm worried about what's going to happen when all the long term unemployed mentally ill's 1 year of ESA runs out and we have to all go to the job center and sign on for the first time. As the way things are going we are all going to end up on ESA for one year then have to sign on JSA. In my case it's going to cause me distress as I don't like sitting in waiting rooms with strangers, on a bad day this could give me a panic attack. Job centers are all really open plan too, and even when you are talking to the advisor there is little privacy just a divider between you and the person next to you. For those of you who have never experienced a panic attack, Imagine having to do a "work focused interview" and sign a piece of paper while you are crying, gasping for breath, and can't hear the person talking to you as all you can hear is blood rushing in your ears. And all the time you're experiencing a desire to run and hide, this will give you some idea of what it would be like for me to have to go and sign on every two weeks.And that's just what my mental illness does to me, I have friends who have illness's (it's actually defined as a "personality disorder")that can make them get angry very easily, and when they get angry they can't remember what they have done afterwards they start to have a blackout, and are capable of beating another person to a pulp or even killing them, throwing furniture, screaming terrifying abuse at people, using unlikely objects they pick up from around them as weapons etc.So imagine the scene down the job center one Monday, the staff are trying to deal with a woman who's having a panic attack already, then in the next cubicle a guy with a personality disorder loses control of his actions after getting so frustrated by his advisors patronizing attitude and starts beating them, maybe even to death if the one security guard they will have can't stop him before the police arrive.there are millions like us and we are all freaking out everywhere already, scenes like this are going to start unfolding all over the country in about a years time, and it terrifies me.

There's no way I would qualify under this, I expect. I have seizures, so not only is my health intermittent, but at times I can function just like a "normal" person.

The erratic, unpredictable half hour to ninety minutes in which I lose control of my body are hard enough to describe under the DLA forms as it is - they only take account of the time I am having the seizures, not the hours each day my husband/carer and I spend wondering when the next one will happen.

I'll have to start looking for employers who don't mind their staff collapsing every day...

Just over 2 years ago my life changed forever. In a catistrophic series of life threatening conditions, five week coma, weeks on HDU and then more weeks at a rehabilitation hospital. Unfortunately, dual incontinence were two of the issues (among a multitude) which I am permanently left with; so it would appear I at least should qualify for some PIP because I pooh and wee myself very often:|

I've been working with the assumption that I am likely to be losing all of the money I currently receive when the new regulations come in as they just don't seem to take account of the right things to fit my case.

Currently I receive higher rate care DLA, higher rate mobility DLA, and incapacity benefit. All of this is paid into a separate bank account that I use solely to fund my illness associated costs and would never spend on anything else.

I am fortunate that my husbands job will pay for our basic living expenses (mortgage, bills etc.), but there just isn't any money left over to cover the costs of my illness, so without the benefit income I don't know how I will continue and I am very worried that my health will deteriorate and I will end up spending a lot of time in hospital (at the tax payers expense!).

Not being able to afford all the things I currently do to mitigate my condition, I know I will end up with more severe problems and will probably become a drain on local social services.

The cut in DLA won't save money as it will ultimately cost millions for the NHS and social services.

What will happen to us? We are all going to die of fear, or starvation, or the cold... And the little flag that once waved in our hand will wave no more, and it will still read "I warned about this." Jew, disabled. It matters not when the Nazis have you on their list.

I'm very concerned that a lot of ill people are going to expend yet more spoons on responding to yet another DWP "consultation" exercise. As we've seen with the Spartacus Report, they lied about the findings of the original one, then they tried to rubbish the Spartacus Report! Why should we believe the DWP will not do exactly the same with this "consultation"? This is a problem, because if we DON'T respond, they'll say we didn't bother, or agreed with all the wretched criteria, and if we do respond....ignored?

I HAVE HAD THE IDEA THAT WHOEVER RESPONDS SHOULD ALSO SEND THEIR RESPONSE TO SOMEONE LIKE THE BROKEN OF BRITAIN SO THAT THERE IS A RECORD OF ALL RESPONSES AND WE DON'T HAVE TO GO THROUGH THE WHOLE FREEDOM OF INFORMATION FIASCO AGAIN TO PROVE WHAT PEOPLE HAVE SAID.

This is DEFINITELY a plan going forward. This time we want people - if willing - to send as many of their responses to u - we'll even ask the charities, councils, DPOs etc if they want to take part. Thy will all be there, in a public space this time.

We even have the mailing list of people who responded last time ready to go to invite them to join ;)

Hello sue.Is there a list of sites to comment on or to send/copy comments too.The calumlist is one site that is very interesting and dovetails with the comments below on legal action but it dont know if it has a comments section but they are worth contacting anyway.There must be lots of other too.I do think it will become obvious that we need to have a mass action day sooner or later and bearing in mind the Daily Jail is bashing us all again we know the media blitz against us is still on.I get the Focus magazine and there is even a piece in there about the mind by a professor who funnily enough is at the university of wisconsin...were unum is very active.....The article is called How to rewire your mind...neuro science.. more like psuedo science me thinks.But reading this you can see where they get the bio model from....

Hi there, just stepping in to say the Spartacus simplified version of the draft PIP criteria has now been uploaded to the wearespartacus.org.uk website. Links are currently available from the home page, or click on the Spartacus Publications page link :)

And you can put your comments etc on the wearespartacus.org.uk website, but we are encouraging everyone to send their own response to the DWP. We hope to upload a simplified version of the consultation document soon, just need some spoons :)

"Under ESA, I simply would not qualify. This is because the "descriptors" ignore pain, fatigue, vomiting and diarrhoea."

And that, of course, is because of the biopsychosocial model. Didn't you know that pain and fatigue go away when you have a positive attitude and you go to work and don't give in to your illness? If you don't see yourself as disabled you won't be (these words were actually said to me by a doctor so they must be true. *sarcasm*). Never mind that pain doesn't actually bugger off if you push through it, let's all say it does and ignore the consequences.

Pain and fatigue are the worst things about my conditions. But it seems they are both going to be completely ignored for the purposes of PIP.

Yes. Below, a ref. to more than you could possibly want to know on BPS model straight from the horses' mouths... and I mean the big insurance horses..but it's useful to know as much as possible about the theories that underpin the current debacle:

Actually, I'll add in some more. It makes me want to cry, it's so horrendous what they think of people with M.E/Fibromyalgia. Prof Wesseley couldn't do more damage if he tried, and there will never be any convincing him how very wrong he is.

I 'should' qualify for the higher rate of mobility as i cannot get out of the house - even fammiliar areas without my Guide Dog or a sighted guide as i cannot see if things have changed in a fammiliar environment so would walk into / fall over things. i currently get the HRM based on the 'new' severe visual impairment rules in DLA.

I currently receive MRC but am not sure how it will translate onto PIP i score myself as 10 points (i think) but obviously, it depends on how they choose to measure me at their will. my middle rate care is based on cooking, looking after my appearance (cannot see myself in the mirror) and making sure i dont have food/dirt on my clothes - and that they match! few other bits too that i can't remember due to meds.

i also have chronic major depression, OCD and anxiety disorders. my meds for that mean i forget a sentence halfway through it, cannot concentrate for more than a few minutes and need a lot of prompting to wash, dress and get out of bed. i need help to take medication, and need watching over 24 hours a day as i self-harm when left alone. i have never claimed for my mental health, but i am going to have to.

i have an indefinite award for DLA at the moment as my vision simply will not improve. what would be the point in re-testing me?

am also very very worried how this is all going to effect myself and my family...my husband is my carer, and yes through my own stubbornness there are things I try to do myself and for myself, but I ultimately end up paying the price! After years of being an independant lady and running my own business I hate relying on anybody for anything...but have found myself in this exasparating dilemma that I really do not want to be in....do these people honestly believe we like being in this situation!! Every time I fill out a form that requires me to state my occupation etc....I have to write the word DISABLED....and I am made to feel ashamed...I did not ask for this or want it but life has dealt me this card, my family are not in a position to help out financially and all I ask is that after years of contributing I now need a little help, so why deny me??

How many points would i get then sue by not being able to eat or drink properly ie being very underweight and only being able to eat once a day with a bad lung and heart for good measure ? also very low blood pressure /nausea /vomiting etc

Anonymous (05:40): needing watching over constantly due to self harm risk is, as far as I can make out, not covered at all. It's only needing watching over during the certain specific activities, and it seems to be only for risks specific to those activities, not risks that you are under the rest of the time. In other words, risk of self-harm seems to only be covered if you are, for some reason, more likely to self-harm when cooking, or in the bath, or whatever. You've prompted me to add that to my list of problematic scenarios, so thankyou!

The descriptors for PIP also don't mention pain, fatigue, nausea or any such either - and the Government give the same explanation for why this is okay as they have for the WCA. Where those things are bad enough to affect safety, repetition, etc, they are considered there.

It's because they're going for a purely functional approach. Once you have that as a premise, it makes perfect sense that pain, fatigue and nausea are not addressed directly - they're only addressed where they amount to a functional limitation. It makes sense internally, but the results of it demonstrate that the premise is either not a good one, or the results are not being properly applied. At what point is one 'unable' to do something? DLA caveated the HRM question by requiring walking without "severe discomfort", discomfort covering almost any unpleasant sensation. PIP needs to add that back in for ALL activities, I believe. If you're going to measure things functionally, you have to measure people's function without it causing them to feel like crap.

Yes: “bathe” means clean one’s torso, face, hands and underarms; - This needs to be changed as at the moment it makes no provision whatsoever for those people that have difficulty or need assistance from another person to clean themselves from the waist down including their legs and feet. Instead of the word torso I suggest 'whole body'. A 'wash' is usually just the upper body, face, hands and underarms, bathing itimates the whole body including lower parts.

To not change this I would assume that you were saying people don't need to wash their genitals, legs or feet! Currently those who could theoretically wash their upper body but not their lower half wouldn't under this particular descriptor qualify for any help whatsoever, which seems very wrong.

Draft response to Q1 of the PIP Consultation:

I believe that more activities should be included in the Daily Living Activities section. At present there is nothing about how chronic severe pain can limit a person, nor is there any provision for a person's medication and how it might affect them. For instance, a lot of medications state in their side effects that one should not drive or operate heavy machinery due to various things like dizziness, altered consciousness or drowsiness that could cause someone to fall asleep or injure themselves if they fell.

In the old DLA form there were questions relating to what activities a person would like to undertake if they had the help they need and a space to write in the help that would enable them to do these things.

That is a technical definition. However, the Government didn't point at that definition when responding to people saying "what about cleaning the perineum?". Instead they said that was seen as part of toilet needs.

In any case, it needs clarifying. Why on earth should the legs and feet be excluded, the only things then not covered by any part of bathing and grooming?

Indeed (and I just checked), the Government's own "easy read" info on the subject says "clean the top half of their body". So I think it's clear their definition of torso, at least in terms of how they're thinking, only goes down to the hips, or thereabouts.

What chance of getting PIP if the terminally ill are being asked to look for work?

In a written answer to MPs the government has said 1000 letters were sent to terminally ill claimants within a 3 month period ,suggesting they look for work.Despite being informed they had less than 6 months to live.

A DWP spokesman said"it would be wrong not to give those with a terminal illness the same opportunities as others."

After reading this, I feel like sticking the head in the sand. I did laugh on the ESA part however - Poohing yourself at work a bit most days is not a reason not to work. Poohing all over your boss is. You have to laugh at the madness of these policies.

Do they have 300 DWP consultants in a big room brainstorming this crap (pun) ?!

The public need to be told somehow the Welfare Bill aplies to them , not just us.

Anyone on tax credits will have to find more work, more pay or a second job if not earning enough. Everyone would be angry if they knew cancer patients were going to lose benefit and be made to look for work.Cutting benefits to disabled children etc.

People think its just the Benefit Cap and are all for it. They have no idea what it means for them. If they did I predict a sh8te storm of epic proportions.

So many have signed on the first day, some spam filters are recognsing it as spam and putting the confirmation in the junk email. Check your junk email or try again. In 3days 1618 have signed up.It worked fine for me. Best of luck.

Why, just because we have an illness or disability, are we not to be allowed to have a proper bath, like the rest of the world? This is discrimination!

For me, a hot bath is a "treatment" that helps with my pain control management plan. Unfortunately, it also drops my already low blood pressure to the point of passing out. No supervision required for being unconscious in a full bath of water then?

If you can get a relevant medical professional to 'recommend' baths, then needing supervision during them will (I think) suddenly score you extra points, on the managing your condition activity. It would become a therapeutic activity, and you'd need to tot up the number of hours you need the supervision for over a week to score one or two extra points...

Another little point, relevant to digestive issues (taking an inclusive view of the digestive system) that's very odd... eating is defined as cutting up food, conveying it to your mouth, chewing and swallowing. However, there is no descriptor appropriate to people who are unable to chew, and are thus on a puree diet or similar. They just don't fit any descriptor.

It's even murkier for people who are on a pureed diet for reasons other than chewing, like my late grandmother who had a chronic oesophageal tear. As it only mentions it up to the point of swalowing, it's irrelevant. Similarly for anyone who needs any sort of special diet, however awkward or expensive. I don't think my IBS should give me extra points, een with intolerances stopping me eating a lot of things people take for granted (like most supermarket bread) - but some dietary restrictions are far, far more problematic.

I hadn't self harmed for several years until last Weds when the govt voted to ignore the Lords vote on Welfare Bill reforms. Stayed in bed for 2 days, unable to look after my diabetes at all, and just cried and stared at the ceiling and cried and cried and hit myself. I feel my life is falling apart now thinking about the future and how I'll just be sitting indoors feeling ill all day with no quality of life, no help and no real human social contacts anymore as I won't have any money to get out. My main problem is chronic fatigue/ME (and depression/anxiety/eating disorders...) but I've always been advised to claim IB & DLA on my diabetic problems (frequent hypos, visual problems, neurological damage in my legs...) as I wouldn't be successful otherwise. I've been to tribunal a few times and always won - eventually put on indefinite DLA 2 years'ago : high rate care & low rate mobility. I know I will lose these completely under PIP criteria. It all feels so completely hopeless. I am relieved that some stronger people are able to fight this and wish I could too. Thank you to all you wonderful Spartacus folk.

"Under ESA, I simply would not qualify. This is because the "descriptors" ignore pain, fatigue, vomiting and diarrhoea."

That's not true and it is quite a scary thing to put out there, especially at this time.

No disability benefit is awarded on the basis of symptoms, but of functional impairment. That hasn't changed. If pain, fatigue, digestive problems etc. stop you from doing any given thing, that's functional impairment.

For example, someone might have problems "mobilising" because of pain, paralysis, amputation, spasticity, vertigo, co-ordination problems, all kinds of different things, which they can't possibly list.

Despite the many disasterous rejections and mis-placings and the vulnerability of people who have subjective symptoms, everyone I know of who has been transferred to ESA and put in the Support group has a condition dominated by pain and fatigue.

The new PIP criteria don't rule out any conditions or symptoms, it just has a ridiculously narrow idea of what kind of impairments qualify as significant to daily living. That's plenty scary enough.

Sorry, I have to disagree, and this is something that has been buzzing my brain all day.

The more you enable yourself under PIP, the more stubborn you are, the more determined, the LESS you will qualify!! So MY pain and fatigue are not taken into account at all because I utterly refuse to let them stop me doing things.

If I gave up and laid in bed all day, I'd qualify for higher rates of both. It's farcical.

Pain and fatigue AREN'T really taken into account - and I speak as someone who has studied how the descriptors are actually APPLIED for months. They are not taken into account per se, only on how they limit you. This is a vast contradiction in all of these systems.

The only way to qualify if you have a painful, exhausting, chronic condition is to roll over and give up.

The big problem with pain and fatigue in ESA isn't that the rules don't allow for it, it's the assessors don't so much of the time. It's a problem of execution, not design (except insomuch as the design fails to emphasise those aspects).

My take, put simply: both the WCA and the PIP assessment should be re-framed to make it clear that you have to be able to do the activity without severe discomfort. That would improve a lot of concerns straight out of the gate.

all i can say is god help us and just hope and pray that the prime minister gets to hear of all the stress he has put us through and then gets kicked out of the government along with IDS/MILLER/FRAUD AND GAYLING It is possible at some point and we have to believe that in order for us to pull through from death

Hi - I too have inflammatory bowel disease, have had to shower and clean myself at work, got no bleepin sympathy at all! can not do my job as a teacher as I can not take kids out on school trips, can not spend all day standing, can not do my job as I had a review and due to having so much time off, came under competency as I didn't complete training, I'm now off work on no money what do ever and have no chance of claiming anything. I declare the disability now when I apply for jobs, in case they give me hell when they find out and guess bleepin what! they don't even interview me - by september this year, we'll lose our house and as we have no children, we'll have no chance of social housing and can not afford to rent! it's going to be a poopy year all round, in my house and in my life!

I am finished.In my forties, suffering from mental illness.I have lost everything and everyone, including myself, so many times.Now I am to lose the means to survive.I have no inheritance, no property, no family support.

And no chance of work that will be flexible enough to fit with ill health more two thirds of the time, in a good year.

I feel the mentally ill don't really have a voice.We are vilified and ostracised even within disability circles.

The disability movement looks set for a legal showdown with the government, after the coalition prepared to force deeply unpopular measures within its welfare reform bill into law.

More than 20 disabled people’​s organisations (DPOs) and other charities are now discussing a possible legal case against the government.

Leading figures in the movement had already discussed halting cooperation with the Department for Work and Pensions (DWP) if the bill becomes law, because of their anger at the government’​s failure to listen to disabled people’​s views about its reforms and cuts to disability benefits.

But their frustration reached new levels this week when the government signalled that it would take advantage of the rarely-used “​financial privilege”​ procedure to overturn seven amendments to the bill that had been passed by members of the House of Lords.

The use of financial privilege means that peers will not be able to reinstate those seven amendments into the bill.

Several of the amendments that were overturned by MPs this week would have reduced the impact of government cuts to disability benefits, particularly to employment and support allowance (ESA), the replacement for incapacity benefit.

But despite months of protests, meetings with ministers and civil servants, marches, petitions, and a high-profile direct action in central London last weekend, the vast majority of the government’​s original package of welfare reforms are now almost certain to be introduced.

Leading figures in the disability movement appear to accept that they will probably be forced to take legal action against the government once the bill becomes law.

Jaspal Dhani, chief executive of the UK Disabled People’​s Council (UKDPC), told Disability News Service that he hoped to call a meeting with leading DPOs and disability charities “​to consider what we do next”​.

But he said legal action had already been discussed, because the government was continuing to “​ignore the potential threats to disabled people’​s independent living”​.

He said: “​Ultimately, that is probably what it will come down to: taking that level of legal action against the government.”​

He said the government’​s actions showed that while ministers had appeared to be engaging with disabled people, they were “​not listening”​.

But Dhani said he disagreed with activists who have suggested a possible boycott of communication with DWP, although he understood their frustration.

He said such a boycott would simply give the government a “​free licence to do what they want to do”​ because they would “​see us as giving up”​.

Neil Coyle, director of policy and campaigns for Disability Rights UK, said the legal action could target proposals to scrap working-age disability living allowance and replace it with a new personal independence payment (PIP), and to cut spending on ESA.

Coyle agreed with Dhani that boycotting all engagement with DWP would be self-defeating, and pointed to limited improvements to the bill that had been secured through discussions with the government, including more extensive trialling of the new PIP assessment, and the scrapping of plans to remove mobility payments from disabled people in residential homes.

Coyle also said there was likely to be a demonstration under the banner of the Hardest Hit campaign, which is led jointly by UKDPC and members of the Disability Benefits Consortium, to “​make clear our dissatisfaction with being shut out of the decision-making process”​.

Well I hope there will be a legal showdown, and soon. Having read today's Guardian front page report (which incidentally, wasn't mentioned on BBC Radio 4's Today program's look at the headlines spot at about 7.45am...) about anti-disabled abuse:

http://www.guardian.co.uk/society/2012/feb/05/benefit-cuts-fuelling-abuse-disabled-people?commentpage=2#start-of-commentsand the comments posted online, many of which detail the commentators own experience of abuse at the hands of a public fuelled by the government's "scrounger"rhetoric, I truly feel that the government has blood on its hands and that criminal proceedings are in order.

You may not get a legal showdown as i have said before there are no lawyers in this country According to the law society able to take on the DWP AS NONE ARE QUALIFIED

You may be able to go through the channels however of human rights but it has to be done on a one to one basis as all sick and disabled people are individual and their entitlement as such will have to fall within the EU guidelines based on the laws of the human rights act

The death of individual people is dealt with by the police where a suicide may have taken place as to find the reasons as to why and depending on those investigations bring a prosecution

At this time David Cameron has the upper hand but as time goes by he may fall down like any prime minister or president the downfall can be sudden a number of things have to take place at the same time and are very difficult to predict

All we can do is band together as a group as for the charities they to will have their hands tied the people of the UK will have to fight their corner like i have done over the past 31 years it is not easy that i do know and involves much time and effort of many people that look after me and their time

Despite the DWP's best effort's to kill me I'm still here but for how long is anyone's guess i have faith in the police and my Conservative mp to some extent who is not bad a little slow if i am being honest

as for my care team they have been ace i myself have to fight for life every day i have to eat and when stressed i am unable to if i am lucky it will be one small meal a day so when the DWP try to cause me anxiety they know i will be unable to eat for days ahead and they hope to kill me but as i say the police come round and take notes and the DWP then goes quite for a while and then the DWP kick off again so all in all we just go year in year out round and round in circles

my life wont and cant change even if i were the most wealthiest person in the world the DWP have damaged me permanently and all who look after me agree

will i get justice at some point ? i hope so but am not banking on it

As i say the future is not in our hands and i strictly live day to day like i have always done and just hope the good lord like he has done in the past will keep his eye on me and my family as i do feel his presence at times it's a most odd feeling and i just hope it continues

The lord will deal with the government at a later date that's for certain and if history is anything to go by it will bad very bad for all those concerned

Yes, the Spartacus simplified draft PIP criteria are now published at wearespartacus.org.uk and we hope to get the simplified consultation published soon. You have until April to respond and I would suggest you wait until we've published the simplified consultation document. Sorry we can't be any quicker but we all get short of spoons!

in my opinion they are attacking and slashing the support for vunerable people in society because they havent got the balls to attack anyone else...! they fear riots and strikes and the country grinding to a halt, god forbid that should happen during the olympics or some euro 2012...no they'll strip us first of everything so that the rest of the country sit by and think "dont affect me!" then after theyve spent up on the games they'll go for everyone else...we atleast will have the satisfaction of telling those sitting by and letting this happen "we told you so" before the country goes to sh*t! (little good that'll do us!)

"Poohing yourself at work a bit most days is not a reason not to work. Poohing all over your boss is."

Please be careful Sue, I almost had an accident when I read this. Not the most pleasant day at work and the temptation to evidence as you suggest is, well...tempting. I'm a little surprised to find that the capacity to maintain a sense of humour doesn't automatically disqualify.

My Tory MP thinks I'm exaggerating. My son's suggestion as to the explanation was spot on - the poor man believes what his government is telling him!! Says it all, really, lots of ignorant deluded MP's who believe what the government says - more fool them - and so unhelpful for us!

Reading the link above to the Unum report on mental health made me cry. It referred to Korsakoff's syndrome as a psychosomatic condition that can be managed. A friend of mine had it. For a small proportion of people, it can be treated with Thiamine (note that this is a physical treatment) but for the rest, there is increasing disconnection with reality as the memory is gradually destroyed. It is a form of (for almost all with it) incurable dementia. I wish my friend was still alive so that I could drag her into a Unum office and leave them to try to get enough sense out of her to find out who she was and where she lived, or, for that matter, what planet she was on.

I'm with you there. They treat people with M.E in the same way, despite there being 4000 studies out there showing M.E is not pscyhosomatic. It is terrifying to think that those in power have it so wrong; it makes you so vulnerable.Evil, evil people.I was really shocked too to see references to 'hysteria' (interspersed with references to converstion disorder). Hysteria is a nasty, out of date diagnosis; I didn't think anyone use it anymore. The main treatment by doctors for hysteria used to be genital manipulation - i.e the doctor making the patient have an orgasm. It seems we may have left that kind of sexual abuse behind but something of the thought about it lingers on.

Just the names change ... Nazi, Coalition, Jews, Disabled. Get out of this country while you can, for God's sake. If you can't do that, go onto a busy street and set yourself on fire. Make sure you write a jolly good letter to the Press, before you do it.

My MP tells me he's sure I won't lose my (Motability) car. I really hope he's right, but he's clearly not speaking from any knowledge, just demonstrating that he believes what his government is saying - like all the other naive MP's!!

All the mp's say that Jane even mine say I'll be okFunny that as the DWP have abused me for 31 years my mp says it's stopped now yes it has for a couple of months but it wont take much for the DWP to start up again in abusing me there'll never give up until my death and then there'll go after my wife you see if I'm not right

Indeed and she's supposed to be your friend Do you realize that all the welfare team including the prime minister over the past year have never once shown any type of compassion or feelings towards the sick and disabled not even once which just goes to prove what type of people they really are pure scum

Sadly they are not normal people their backgrounds are deeply floored

Where as a normal person can watch this type of programme and can feel the pain just as Wilbur Ramirez has

this programme has some upsetting scenes for a normal person for miller and her clan they wouldn't even watch it but if they did they wouldn't even care

A DWP strategy document talks about a goal of 'cleansing the stock of fraud' regarding benefit claims. I think what they mean by stock is the cases in payment, but hard to avoid implication that claimants are stock, not just their claims.

I had to have a brain scan and treatment before i could even get my DLA So i know what it's like as i have said before it's not good because if you don't have it they say your a scrounger They will trip you up every step of the way if you let them their not human and me like a sucker have had to pay the price

So you have to careful not to say your tired cause the DWP there'll soon wake you up http://newstopnight.in/wp-content/uploads/2012/01/shock-treatment.jpg

You know what becomes evident from everything we see and hear about from the wrb and the health bill and the cuts and the banking crisis is simply this.When these bastards were in opposition they had plenty of time to plan EVERY move they are making.They would put together one simple plan and it is this. Once ..should they ever get back in power after Labour they would by whatever means put these well laid plans in to operation and wrap it all up in the cloak of REFORMS to this reforms to that but in essence thier WHOLE ideology is to sell off as much as they can to the highest bidder and any company that they have a vested interest in and do it in such a way that once they are out of power ,which they would fully expect to be at the next election after such unpopular policys, then it would not matter as it is such a mess that we cant entangle it...we cant buy back everything they sold off,and they have now controlling interests in every thing that was once publilcy owned..they have the money and they dont bloody care about being the govt because they now REALLY RUN things and they dont have to worry about little things like democracy or being accountable as they own and run it all now anyway.Thay my friends is all it has ever been about....money and power over us all and you aint got ANY vote that will ever change it.Then when the banking crisis came along great for them cos now they can justify all this on the back of having to make cuts and the grabing bastards plans are now so much easier to implement on the back of the mantra we are all in it together......and people believe that shit... NOW that is the real scary thing

So if you are incontinent over stuff owned by the company you work for its OK as long as you can clean it up. I'm not sure the company boss would agree. How many people like that are actually going to get employment without trying to pretend it doesn't happen on the applications and at the interview? None I would imagine.

I'm not sure why you chose to pick out the fact that a stoma gives you 2 points. That's actually very generous. Having a normally functioning stoma on it's own does not disable you in any way, and does not give rise to any care or mobility problems. At the moment someone with "just" a stoma should not qualify for DLA, so there's no reason why it should change.

As for TPN, most people on TPN are trained to do it at home. Given the fact that anyone on PN or EN feeding needs to have someone available to help them in an emergency (even if they don't have anyone) then that should continue as normal.

[QUOTE]AnonymousFeb 13, 2012 02:48 AMI'm not sure why you chose to pick out the fact that a stoma gives you 2 points. That's actually very generous. Having a normally functioning stoma on it's own does not disable you in any way, and does not give rise to any care or mobility problems. At the moment someone with "just" a stoma should not qualify for DLA, so there's no reason why it should change.

As for TPN, most people on TPN are trained to do it at home. Given the fact that anyone on PN or EN feeding needs to have someone available to help them in an emergency (even if they don't have anyone) then that should continue as normal.[/QUOTE]

you obversely don't have a stoma a stoma to many people can be very debilitating causing much stress and depressionSome days they will work well and some days they don't work at all and can cause pain at any given time so your wrong someone with a stoma should get DLA at the middle rate as they in many people are unpredictable coupled with the anxiety that cancer is just around the corner

I have known many people with a stoma in my time because of cancer and the cancer as always come back and killed them

Well having been a friend of st marks since 1975 and patient and a personal friend to the late sir Alan parks also from that period there is nothing i don't know about or have not seen in my time with regards the bowel.

So yes i do know that you can have a stoma other then cancer

All i picked up on from your earlier reply was the fact that your all right so everyone else should be which is not the case and never will be

I have IBS and many other things too, i also can not walk and i’m in pain 24 7 and on strong pain killersover the last few months i have been in and out of hospital when the pain was not controlled by the medicine

the pain gets so bad im just rolling around crying and screaming until the attack is over and that can take days this is a pain on top of the normal ibs pains i get

so when i was in the middle of an attack that myself and family thought was the end for me and that i’d ether die or spend a long time in hospital i get a pip form to fill ini was far to i’'ll to care so a family member called them telling them they would have to wait as i was so illthey gave us a extension on the time allowed to send it back

so after it was filled in and sent to them i find out that they have stopped my money and it had been stopped for months

so because i was too ill to send the pip form in on time they stop my money that we need to live and that i need for hospital and the things i need to help my illnessand now even though i recovered enough to have a pip visit they will not restart my money and we have to wait and see if i get pipwtf why do this to me, i’m way below the poverty line

I have SBS and have TPN but I am not classed as being eligible for mobilty. Only get standard rate disabilty.Just wondered if the powers that be at the goverment have any idea what's it's like to end uo daily covered in Poo, crying while trying to clean yourself up. Which can take several hours on a bad day.Pips are saying I do t not qualify for mobilty because I can plan a route, I can plan a route up everest but it doesn't mean I am going g to climb it. I would love one of these people to explain what I do when I am covered in Poo while I am out , can't get on the bus can't get in a taxi because both of these will not allow me to. I can't clean my self up because I need support to do this. I have kidney failure and get very tired very quickly. Would really like someone in this goverment to respond to these questions. But they won't. As usual.

Wikio

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.